Autism in health care – what are patients and caregivers dissatisfied with? A study of complaints to patient boards in Sweden
Åsa Hedlund, Magnus Lindberg, Malin JordalPurpose
The number of people with an autism diagnosis is increasing globally. Health-care professionals may encounter these patients in any type of health-care setting, which makes it important that they understand the challenges autistic patients face in relation to health care. The purpose of this study was therefore to analyze autism-related complaints submitted to patient advisory boards in Sweden.
Design/methodology/approach
Eleven patient advisory boards provided patient complaint cases for the years 2022–2024. In total, 407 cases were analyzed both quantitatively (descriptive and comparative statistics) and qualitatively (manifest content analysis). Comparisons were made between physical and psychiatric health care.
Findings
Most complaints were submitted by caregivers of autistic patients and concerned negative staff attitudes; inappropriate or incorrect treatment; long waiting times (especially for neuropsychiatric assessments); insufficient information; poor coordination; limited involvement; and issues related to administration, accessibility, competence and continuity. A few complaints addressed the health-care environment and confidentiality breaches. Complaints about staff attitudes, waiting times, diagnostic processes and staff competence were significantly more frequent in psychiatric health care than in physical health care.
Originality/value
The findings from this unique and comprehensive analysis of patient complaint cases highlight the need for improved staff training, enhanced communication and better coordination in health care for autistic patients, particularly in psychiatric health care where complaints regarding staff attitudes, waiting times, diagnostic processes, and competence were most frequent.